Daughter-8 yrs just diagnosed...our journey begins
 

Hi,

We just found the site and wanted to introduce ourselves and our daughter Lillie's story. Lillie started having abnormal/excessive bruising about 2 months ago. After a few episodes of noticing Lillie being more pale than usual, and at the prompting of a relative, we decided to let the Dr check her out. After one brief Dr. visit, a quick visit to the lab for blood work, a scary & unexpected 3 day hospital stay for extensive testing and two bone marrow biopsy's later, we fast forward 3 weeks and here we are on January 30, 2008 with the final diagnosis that our 8 yr old Lillie has AA. We meet with the Drs. tomorrow to discuss her diagnosis and treatment plans, including testing for our other 3 children as possible BMT matches. We're riding the wave of emotions that come along with understanding AA and how we will deal with it.

We look forward to sharing & learning more from everyone on the forum.
Many Thanks in Advance
Robbie & Vickie Inks
St. Louis, MO

Robbie and Vickie,

I'm sorry that you need to be at this website, but I hope you can get some help and information for Lillie here.

If you haven't already done so, you should contact the Aplastic Anemia & MDS International Foundation. Their information packet includes "Aplastic Anemia Basic Explanations" and "Talking to Children About Bone Marrow Failure."

When Lillie was in the hospital for 3 days, was it at the Siteman Cancer Center at Washington University (in St. Louis)? If not, will you go there for her treatment or for a consultation? That's the comprehensive cancer center closest to you, and it has a pediatric transplant program. Dr. David Wilson is their Director of Pediatric Hematology/Oncology.

Hi Neil,

No, it was St. Johns Mercy, Dr. Robert Bergamini (Dir. Pediatric Hem/Onc) & his partner, Rob Hanson at the David C. Pratt Cancer Center. We meet w/ Dr. Bergamini tomorrow to discuss where we go from here. We just received the diagnosis last night at 8:30pm. I don't know if we will be referred to Childrens Hospital or not??

Thanks, Robbie

It sounds like you are absorbing all the information you can, as quickly as you can, and that's just the right thing to be doing. You are Lillie's best advocates, and part of the decision-making team.

A practical tip: it is wise to go to appointments with a written list of questions so you don't forget any of them while talking with the doctor. I hope you are both going to the appointment tomorrow so one of you can take notes. My wife and I always use that system.

I hope you'll hear details about the diagnosis, treatment choices, Lillie's current condition, and that you won't be shy about asking where Lillie can get the best possible care. You are lucky to have two hospitals with pediatric hematology specialists. They are only about 10 miles apart, right? Don't worry that the doctors will be offended if you plan to get a second opinion. No good physician will mind if you confirm a diagnosis or treatment recommendation, and the best of them welcome it because everyone wants what is best for Lillie. If they can share the bone marrow biopsy results, that would avoid needing another BMB.

You might ask Lillie ahead of time what she would like to know, so you can be sure to ask on her behalf. Dealing with aplastic anemia is frightening for everyone, and so is fear of the unknown. Kids often don't have the same concerns we adults do. Maybe she'll want to know more about what it means for going to school than about the treatments.

Please keep us posted.

Hi Robbie and Vickie.

Sorry to hear about your little girl, Lillie. You have come to the right place for support. There are many people living your same experiences, including myself, with whom you can share struggles and triumphs with. It's so helpful to be able to refer questions and concerns to folks who have been there and done that so to speak. It's a wealth of information and experience.
Our son, Evan is 4.5 months into the journey, and while it is (and probably always will be) still scary and frustrating, knowledge is power and it helps to reduce the fear factor.

My heart is with you as you head down this road.

Hi Robbie and Vickie.

I know what your going through I was dignoised with AA when I was nine. I am now 34 just want you to know there is hope out there I was fortunate enough to have an identical twin brother for a BMT match. My prayers and hopes go out to you. I am here for any support you need.

Thanks Denny
 

Thanks for the words of support Denny. I wish we were as fortunate to have a sibling match. Since diagnosis, we have discovered that none of our other 3 children are a match for Lillie. We continue now with dr visits 2-3 x per week for transfusions (mainly platelets). We're waiting on one genetics test to come back to rule out a rare "inherited" form of AA. Assuming results are negative for inherited AA, we'll move to immunosuppressive therapy. I've seen a lot of information about other kids that are going through or have completed IST in the past few years, but I wish there were more folks out there that have 15-20 years post IST experience to share.

The obvious concern when you don't have the sibling BMT match is the possiblity that, even with IST remission, there is always the chance of relapse. I guess we'll cross that bridge if & when we get there. The positive note is that there is continually improved success with pediatric MUD BMTs.

Thanks Again Denny,

Robbie Inks

Robbie,

I am sorry to hear about Lillie. I know how upsetting it is when you find out that your other kids aren't a match. My daughter was the one with AA and my son wasn't a match either. Have they tested you or her mom? It doesn't happen very often that parents are a match but it is possible and in the case of children it seems that insurance companies frequently will consent to pay the typing costs.

A couple words of advice for you if you don't mind...
1. Ask questions and take notes and don't be afraid to go back and ask the same question again. As someone said you are Lillie's best advocate and nobody knows your little girl as well as you do. Don't be afraid to say no and look at other options.

2. Start the bone marrow registry search now. No, I am not saying you should consider transplant now, but I know many people who do IST and then need a transplant and have to wait for a search which can take many months. My daughter's search was just over 2 months and that was considered extremelly quick.

I know this is a scary, worrying time. If you have any questions for someone who has "been there, done that" feel free to send me an email at suzanne_koopman@pacbell.net

Suzanne